The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Followers

Saturday, May 17, 2014

A recent editorial in Journal of Pain Research, entitled "The damage done by the war on opioids: the pendulum has swung too far" discusses that "media sensationalism, neuromythology, and mischaracterization of pain patients as drug addicts has even deterred some prescribers from treating pain patients that they have successfully treated for years without problems of drug aberrancy".

But largely missing from the national conversation and media coverage are the voices and stories of the tens of millions of people that must endure pain on a daily basis. Instead, the day-to-day struggles of these individuals (and their families) to achieve even a marginal quality of life are buried under an avalanche of commentary that stigmatizes and marginalizes these people. That must stop…NOW. It's time for all of us to step back.

It's time for us to remember the people with chronic pain and to honor their humanity as they struggle to find some relief from debilitating pain. And that's where I ask you, to help me, help you.

Friday, May 16, 2014

Doctors have long suspected brain inflammation as a potential cause, but no definite traces of it had been detected. New research, in the June issue of the Journal of Nuclear Medicine, shows for the first time distinct increases in inflammation in particular regions of CFS patients' brains.

Yasuyoshi Watanabe, director of the RIKEN Center for Life Science Technologies and professor of physiology at Osaka City University Graduate School of Medicine, and his colleagues studied positron emission tomography (PET) scans of the brains of 10 health controls and nine patients with CFS. "Many researchers and clinicians, including our group, thought of this before, but apparently no one tried it using PET," Watanabe says.

The research team found increases in inflammatory markers in regions including the amygdala, thalamus and midbrain in CFS patients who had more severe cognitive troubles. They found more of these markers in thalamus and cingulate cortex in individuals who reported worse pain. And they found higher traces of inflammation in the hippocampus in patients with severe depression.

* * * Actually, I'll dispute that -- Hillary Johnson describes using brain scans in "Osler's Web" already ... but now it's out there in commonly-read literature, not just CFS circles.

MAY IS CFS/FIBROMYALGIA AWARENESS MONTH!

www.CFSfacts.org -- where we give you the facts and dispel the myths (also on Facebook)Myths, with research cites: http://www.aacfs.org/images/pdfs/myths.pdfNewest research blog: http://cfs-facts.blogspot.com/

TO DOWNLOAD A PDF, 'Click to read' and then, when the supplement is loaded, choose the full screen option (the 'diagonal arrows' tool). Then click on the download tool at the top of the screen (it's just to the left of the cross which closes the file). Job done!

Tuesday, May 13, 2014

May 12, 2014—Sarah*, an MIT computer science grad, first got sickwhile working on a software project for an international NGO. Severecognitive and gastrointestinal symptoms were the first sign of whatwould eventually be diagnosed as chronic fatigue syndrome. "I wentfrom running a triathlon to being unable to sit up for more than 15minutes," she remembers. "I had a promising career working andvolunteering in areas that I was passionate about, and now my life hasprimarily become about survival."

Sarah is one of more than 17 million people, including one millionAmericans with the disease, which is also known as myalgicencephalomyelitis, or ME/CFS. On May 12, patients and their familiesmark International ME/CFS Day, but sadly there is almost nothing knownexcept that the disease involves the immune system and comes on withflu-like symptoms or collapse following exercise. The medicalcommunity remains baffled, and some even deny it exists or pigeonholeas a psychological disorder.

Patients want answers. Battling through debilitating exhaustion and"brain fog," Sarah and a group of patients around the world arerallying to raise funds for an ambitious new study led by Ian Lipkin,MD, director of the Center for Infection and Immunity at the MailmanSchool. So far, they have brought in more than $55,000 from nearly 400donors in 33 states and 20 countries through the websiteMicrobeDiscovery.org.

In 1997, Dr. Lipkin was recruited by scientists at the Centers forDisease Control and the Karolinska Institutet to lead a study lookingat whether Borna Virus was the cause of ME/CFS. It wasn't, but Dr. Lipkin was struck by the fact that three-quarters of the patients had evidence of immunological abnormalities. "I was intrigued, and thought that resources should be invested in looking at other infectious triggers of disease," he says. More than a decade later,in 2010, Dr. Lipkin was called on again, this time by the NationalInstitutes of Health, to analyze prominent studies that had implicatedtwo viruses—XMRV and pMLV. Like borna virus, they were ruled out. ButDr. Lipkin's search has continued, funded by the Hutchins FamilyFoundation.

The clues have been leading to the little-studied ecosystem ofmicroorgansisms we carry around in our guts known as the humanmicrobiome. Dr. Lipkin's team has already found microbiome abnormalities in colon cancer, stillbirth, and autism, and he believes the microbiome is a fertile area for ME/CFS for the reason that the gastrointestinal tract is important in modulating immunity and has been implicated in several autoimmune disorders. The ambitious newstudy, already outlined in detail, would examine viruses, bacteria,and fungi that may play a role. Once the culprit is identified, newtreatments using drugs, probiotics or a modified diet could comequickly. "I think that the microbiome is going to be where the actionis," says Dr. Lipkin. "I am really eager to pursue that work."

Patients, many who have gastrointestinal symptoms, are convinced thatthe microbiome will bring answers. Amy, a former occupationaltherapist from New Zealand and member of the fundraising team, says,"I don't think the gut and immune system connections have been lookedinto enough in general and also the gut-brain axis. This is anexciting area of research and we get to be part of it."

Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.

ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

I was a dancer, softball player, and volleyball player -- not a couch potato. So when I started spending my non-working hours lying down, it was obvious there was something very wrong.

Then things got worse and I lost my paralegal job because I was functioning at about 10% during the day ... when I was at my desk instead of being in the ladies room for hours.

Generally, I don't watch much TV, but suddenly I was becoming familiar with all the garbage shown during the day because I couldn't concentrate enough to read, and music on the radio clashed with the key of the ringing in my ears. At least a little of what was being said on TV sank into my consciousness through the mental fog, though there were many times I'd wonder what happened, because I was suddenly watching some other show -- since I was home alone, there was no one to tell me whether I was falling asleep or having an absence seizure.

Trying to do my own housework and yardwork was making me sicker by the week. Eventually, my body rebelled and I ended up horizontal for a couple years -- if I sat up for more than 5 minutes, I'd pass out.

Yet the doctors rejected the diagnosis I'd gotten from a virologist 12 years earlier, insisting that I was just depressed. When the anti-depressants made me violently ill, I was accused of not wanting to get well and go back to work. Oh, yeah, because the money fairy is going to drop cash down the chimney every month so I can pay my bills without working. They kept insisting that I had to exercise "even if you hate it" -- um, remember what I said about being a dancer, shortstop, and volleyball ace? I don't hate exercise, but I do hate that exercising results in becoming even sicker. The easiest way to differentiate CFS from depression is exercise -- the depressive returns energized and able to do more the rest of the day, whereas the CFS patient collapses and can't do anything more ... sometimes for several days afterward. But every doctor at that medical group insisted he knew better than I did, and that I was mistaken if I thought that I recalled that previous attempts at exercise resulted in disaster, urging me to do far more than I was physically capable of. Remember, I'd already pushed myself to the point of collapse; exercising via essential housework and yardwork had been too much a few months earlier, and now they wanted me to do even more physical activity?! Their stereotypical paternalistic comments about knowing that "women don't like to sweat because it ruins their hairdo and makeup" didn't sit well with someone who loves exercise; it's harder for me to remind myself that my body won't allow me to dance the night away.

I finally found another doctor -- an osteopath -- open-minded enough to accept that this is NOT depression. I have rashes and fevers and swollen glands and other things that are never ever a symptom of depression. He doesn't know much about CFS, but he's willing to learn. If I bring in an article about some new prescription someone is trying, he's willing to discuss with me the pros and cons (with the reminder that "all drugs have side effects ... some don't show up for 30 years"). Well, yes, I'm willing to put up with dying a few years sooner because I'm taking the drugs in order to have a little more functionality now. Spending 23¾ hours a day in bed sliding in and out of consciousness is not "living". There's no quality of life there.

There is no treatment, no cure, but sleeping pills and pain pills at least allowed me to get enough sleep that my body could start to heal itself. It's been a long hard slog, but I'm up from being able to go out for a couple hours every other week (and spending the next 3-7 days recuperating) to being able to go out 3-4 days in a good week. I'll never get back to 100%, but I'm a lot better than I was 10 years ago.

For private members the document mentionedbelow is attached, but can also be found at theParadigm Change website: http://bit.ly/1jbIjTR

~jvr

````ME and CFS Medical Abnormalities

With the current focus on the development ofrevised definitions for the disease that thegovernment is now calling "ME/CFS," it seemedpossibly useful for all concerned to have aneasily accessible and organized summarydocument listing all the peer-reviewed articlesdemonstrating medical abnormalities in thesepatients.

A PDF summary includes citations and briefsummaries of each of these articles, organizedby type of abnormality and last updated on05/06/14.

(Hopefully this is pretty complete, but please letme know if you notice that I missed anything.)

I have sent this document along to a variety ofexperts in the disease, including those servingon the IOM committee, in the hope that theywill find it helpful.

Topics include:

* Overview

* Cancer Risk

* Cardiac Abnormalities

* Orthostatic Intolerance

* Tilt Table Test

* Other Cardiovascular Issues

* Exercise & Activity Intolerance

* Oxidative Stress & Inflammation

* Cytokines & Complement

* Rnase L

* Mitochondria

* Natural Killer Cells

* Other Immune Abnormalities

* Herpesviruses

* Enteroviruses

* Gut

* Candida

* Mycoplasma

* Parvovirus B19

* Coxiella Burnetii

* Borna Disease

* Stealth Virus

* Other Infections

* Endocrine System

* Brain Abnormalities

* Cognitive Impairment

* Gait Abnormalities

* Sleep Abnormalities

* Pain

* Muscles

* Physical Symptoms

* Physical Abnormalities

* Laboratory Abnormalities

* Channelopathies

* Lipids

* Carnitine

* Nutrients

* ME/CFS vs. Other Conditions

* HLA

* Gene Expression

Unfortunately, most of these abnormalities have never been covered by the mainstream news media, meaning that most people (including non-specialist physicians) have no idea that they have been shown to exist.

A document listing the small number of newsmedia articles on this topic that have been runalso is available (http://bit.ly/1jrfGak)

Best,

Lisa Petrison, Ph.D.Executive DirectorParadigm Change

~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:PEM, NOT Chronic Fatigue, is why patients are bedridden, homebound, unemployed, and unable to walk a block. ~:~:~:~:~:~:~:~:~:~:~:~

Ian Lipkin, professor of epidemiology and neurology at Columbia,recognized for his work on SARS and West Nile virus, scienceconsultant to the film Contagion, has been at work on what he admitsmay be his toughest project to date: research into ME. From the Chronic Fatigue Initiative, Lipkin received $10 million, and his work so far has shown cytokine activation in the disease. Now he's in need of a million dollars for ME research into the gut biome and is making his plea directly to patients. To donate to the research, click hereor here.

Dr. Lipkin and I had a candid conversation about his ME research, thegovernment's thinking when it comes to ME and how to secure moreresearch dollars.

Mindy Kitei: Where can people donate to your research?

Dr. Ian Lipkin: Donate to our research. We're all in the same boat.We're trying to find solutions to an important problem, so I want tobe very clear to your readers that it is their project. It wasorganically developed in response to their needs, and their wishes,and we're eager to serve.

The idea here is that we believe there is an infectious trigger...that initiates immune activation and results in a number of differentabnormalities, which results in turn in this debilitating fatigue andcognitive dysfunction, and all the other symptoms that are associatedwith this disorder. Very similar to what you have with a low-grade butpersistent infection, typically with a virus, but can also occur withsome bacteria.

The idea is to find out what sorts of agents might be implicated inthis syndrome. We have looked at peripheral blood mononuclear cells,where we haven't found anything as of yet, although we're stilllooking, but the area that is obvious to consider is thegastrointestinal track because the gastrointestinal track is soimportant in modulating immunity and has been implicated in autoimmunedisorders, not only those associated with gastrointestinal disordersbut outside....

Kitei: How is your gut research different from other researcherslooking at the gut, including Dr. Chia and Dr. DeMerlier?

Lipkin: We have a very different approach than most people. There arepeople who are experts in viruses or bacteria or fungi, there arepeople who focus on specific microorganisms because they're persuadedthat this particular microorganism or that microorganism is the onethat's important. We approach this with the notion that this isreally discovery. We don't have any preconceived notions about whatwe're going to find and as you're probably aware, our group hasexpertise in looking for bacteria, viruses and fungi. Our approachwill be comprehensive, it will be vigorous, it will be quite deep.

We will use methods designed specifically to find viruses, fungi andbacteria, so as long as it falls into one of those three categories,we should be able to find it in the materials we collect and analyze.

Kitei: Which is in stool?

Yes. We are not going to do muscle biopsies or liver biopsies.Believe it or not, but I've been in meetings where people have talkedabout doing brain biopsies, which shocked me.

Kitei: Unless you had cadavers.

Lipkin: Well, cadavers are very difficult place to look formaterials, unless somebody has an acute illness. People have beendoing that in MS and other disorders. So we do a lot of cadaverresearch. But I'm not aware that there's a large biobank of peoplewith chronic fatigue syndrome from whom one could get such materialseven if we wanted to pursue that.

Our intent is to look at people who have active disease and peoplewho've recovered and to look at their stool and their oral pharynxesas well and to test whether or not we can find differences in thepopulations of bacteria, viruses and fungi in their mouths and intheir fecal flora. Whatever we find by way of differences betweenpopulations, we will test for the relevance and the acuteness of theinfection by using serology, by testing for the presence of antibodiesin the blood that will react with those specific agents.

Kitei: Is it possible that by the time you get to the stool thepathogen is not detectable? I believe Dr. Chia has said that tissue isa more effective place to find pathogens....

Lipkin: Depending on whom you speak to, people will tell you theculprit is a herpes virus in peripheral blood mononuclear cells,someone else tells you it's an enterovirus in the wall of the bowel,other people tell me that it's a stealth virus that's lurking in thecentral nervous system. I mean there are many hypotheses that peoplehave put forward. To get biopsies from the intestine of an individualis not something we can easily do. That requires people who arewilling to have that done, number one. Number two means that you haveto collect those biopsies. And third, I don't know if aninstitutional review board would allow intestinal biopsies on peoplewho don't have intestinal complaints. That would be very difficultcertainly at Columbia....

Kitei: But there are many people who do have intestinal complaints.

Lipkin: But there are many people who don't who also have chronicfatigue syndrome.... I've met the man [Dr. John Chia] at a conferencein San Francisco.... I've been down this path many times before whenpeople who are clinicians try to shift and do certain types oflaboratory work. And it's always a concern for me when they make areport of this type because I don't know what kind of controls he usesto make certain he doesn't have artifacts. We went through this with[Dr. Andrew] Wakefield, as you may remember, with MMR and autism. Wewent through this with XMRV in prostate cancer and then in chronicfatigue syndrome….

It seems very unlikely that if you have a virus which is growinginside the bowel that as you shed the lining of the bowel—whichhappens continuously—that you're not going to have viral particlesthat will also be present in feces. We've done so much work withfecal material from bats to camels to people to gorillas that I'mconfident that if there's something present within the bowel that wewill be able to see it as long as it reaches a certain threshold forconcentration, and that threshold for concentration we know, and mostpeople don't know that number.

Kitei: How many subjects will you have in the study?

Lipkin: At present we're not nearly where we need to be in terms offunding to do what we need to do. Ideally we would like to have aminimum of 200 subjects. My view on chronic fatigue syndrome is thatthere are likely to be multiple pathogens that are implicated and whenyou do discovery, sensitivity is not as good as when one uses aspecific assay. Specific assays exclude all other material that maybe present in a sample, and sensitivity frequently is an order ofmagnitude or 10-fold higher than the discovery methods that we use.So all we need is to find a couple of candidates, and then we'lldevelop specific assays and then go back into the rest of thepopulation to see whether or not we can chip away at the problem.

I would not be at all surprised if there were multiple agentsimplicated in chronic fatigue syndrome. But if we can identify 10percent of people with herpes viruses and another 10 percent withBorrelia pathogens and another 10 percent with enteroviruses, and soforth, we can develop specific tailored approaches for dealing withthese problems. It's no different from dealing with cancer. In[1971], you had Nixon declaring the war on cancer as though it were asingle agent and we now know that even if you take adenocarcinoma ofthe lung, there are very many different variations. Some areassociated with very specific mutations and if you can exclude orinclude those mutations you can tailor therapy specifically for anindividual that's nontoxic and highly effective.

And my thought is that there is final common pathway for chronicfatigue syndrome, but there may be multiple triggers. So ourobjective is identify as many potential triggers as we can, and thenbegin to move toward some sort of clinical trial so that we can helppeople with specific management recommendations.

"Vulnerable people who do not have others looking out for them aremost at risk for not getting the science that's needed to addresstheir problem."

Kitei: When is your study on biomarkers coming out?

Lipkin: Mady Hornig spent last weekend with Dan Peterson in InclineVillage pulling together a study on spinal fluid and that is the firstone that's going out for publication.

The second one, which concerns cytokine measurements in chronicfatigue syndrome in peripheral blood will follow that probably byabout a month. We've presented that data in public forums, because wefelt it was important to get out.... But the actual publications inprint will take a few more months.

Kitei: And in what publications?

Lipkin: No one knows. You submit and then move on.

Kitei: Did you look at natural killer cells? That seems to be onething that most patients have a problem with. Either too many thatare not functioning, or too few.

Lipkin: No, we have not. It would be very difficult to use that as abiomarker. It's very complicated laboratory research. We're hopingto develop a biomarker that going to be inexpensive and simple, ratherthan requiring people to culture cells. I'm optimistic that we willget there, but that doesn't really tell me why the NK cells areabnormal or why the cytokine patterns are abnormal. That's what I'mfocused on. Identifying biomarkers is going to be useful primarily forpersuading insurance companies that patients are not malingering. Ihave no doubt that people are not malingering, but that's not going totell me necessarily why people are getting sick and what to do aboutit.

So our focus is on the origin of the syndrome. That's the place wherewe can make the largest contribution.

Kitei: I've read that you found in 85 percent of pooled samplespossible evidence of retroviral infection, but that you believe that'snot related to ME. Why do you believe it's not related to ME?

Lipkin: We also find it in controls. We need to find somethingthat's going to be specific.... All the studies we do are very wellcontrolled because we're involved with clinics where they see hundredsof patients a year, like Nancy Klimas, Cindy Bateman, Dan Peterson,Jose Montoya and Sue Levine.... These are the people we have selectingour patients and controls, collecting materials and working veryclosely with us.... We decided to go with the blue-chip group so thatthere's no question when they send us a patient....

Kitei: Are you going to be using the Canadian Consensus Criteria?

Lipkin: We use all the criteria: the Canadian Consensus Criteria, theoriginal Fukuda criteria, the criteria used by the programs run byNancy [Klimas] and Dan [Peterson], Tony [Komaroff] and others, we usethe most stringent criteria. We also try to emphasize wheneverpossible those people who give us a history of a viral prodromebecause that also suggests that these people have the agent present.And whenever possible we try to get people who are having an acuterelapse…. A paper coming out in the not to distant future about whichI'm very encouraged has to do with RNA profiling host response inthose with chronic fatigue syndrome and controls and these areindividuals from the original NIH XMRV study.

Kitei: And what have you found?

Lipkin: I can't say yet. I'm not trying to be coy. We're still inthe process of analyzing it. It's an enormous amount of information.When you start doing genetic sequencing, it can take months to analyzethe data. It's like building a house. So, at the end, when you'reslapping on the paint and polishing the floors, it goes very veryquickly, but before that it just looks like chaos.

Kitei: German researchers found Epstein Barr virus-encoded small RNADNA in 11 out of 20 patients, compared with 3 out of 20 controls.

Lipkin: That's such a small number of patients that I don't think it'smeaningful.

Kitei: Is it something that should be repeated with more patients?

Lipkin: It's certainly interesting. There's so much scattereverywhere. One of the reasons why we're doing it the way we're doingit is that we don't go into specific bias. We think what we to do isthe same thing that has been done for discovery in any number ofdiseases. The patients deserve that. The field deserves that. Oneof the problems we have is to a carpenter with a hammer everythinglooks like a nail. We don't have that approach.

Kitei: Do you believe ME is contagious and/or infectious?

Lipkin: I don't know that, but I do think there's an infectioustrigger. It's ultimately going to be a gene environment interaction,and we're going to have to explore the genetic susceptibility issuesas well as the environmental triggers....

Kitei: Do you believe this is a hit-and-run agent?

Lipkin: In some cases it may be. I don't know that that's the case.We haven't proven anything as yet, except that we know that somepeople have an indistinguishable illness that reflects infection withborrelia species or herpes viruses. If you talk to Konstance Knox,you think everything is HHV-6. Some people think it's HHV-6, somepeople think this is EBV, some people think it's Borrelia, some peopleit's another bacterium, some people think it's a "stealth" virus, somepeople think it's a retrovirus, there are a number of possibilities.They can all be right, and they can all be wrong.

Kitei: Following Koch's Postulates, have you considered finding ananimal model for ME?

Lipkin: It would be very difficult to develop an animal model rightnow. I've been dealing with this for a long time in autism. It's adisorder in which people don't make eye contact. What is eye contactin a rodent?

Kitei: There's some researcher [Dr. Robert Naviaux] who did this inautism recently and came up with a drug [Suramin] developed in 1916 totreat river blindness that reversed the autism in mice.

Lipkin: I'm not persuaded. The only thing that seems to work withthese kids is applied behavioral therapy. What you're doing there isstarting very very early and trying to socialize them….

"I have been in competition now twice to get funded, and the peoplethere who reviewed me gave me abysmal scores. And the critiques of mywork were unfair, and one of the people who critiqued my work said, infact, that this is a psychosomatic illness. I was floored."

Kitei: If you did find the cause of ME, would you become involved infinding effective treatments?

Lipkin: Yes. That's job one. We're not in this for intellectualinterest. We're trying to make differences. I'm a physician. I sawsome of the first cases of chronic fatigue syndrome in the early 1980swhen I was at the University of California at San Francisco, referredto me by Dan Peterson. It's been a long time. We need to bring someclarity.

Kitei: There's been so little funding. You have Dr. Fauci's ear. Hehas talked about this disease being psychiatric. That was documentedin Osler's Web.

Lipkin: No, no. I don't think that's fair. I know Tony Fauciextremely well. And there's another thing people misquote. [Peoplemisquote] William Stewart, surgeon general in 1967, when they said[that he said] that the era of infectious diseases is over. There's noevidence that he ever said that. My esteemed colleagues...continually misquote him. I've never heard Tony Fauci say anythinglike that [that ME is a psychiatric disorder]. The fact that it's inOsler's Web doesn't mean he said that.

Kitei: She's [Hillary Johnson] is a good reporter. Have you talk toDr. Fauci about your theories [of ME]?

Lipkin: In fact I have spoken to him about it. That's why I can'tunderstand why people think this is the case.

Kitei: There's no federal money for ME research. Year after year there's no money, and more is given to male-patterned baldness than to this disease.

Lipkin: Let's backtrack and examine how these decisions are made.First of all, the National Institutes of Health gets money from theCongress. The Congress will mandate what it is they want people todo. The Department of Defense has funding for autism, for a number ofother things that people push, including, as you mentioned, somedisorders that are specifically male.

One of them is prostate cancer. The Department of Defense has beenrunning programs on prostate cancer for decades. Why? Because men inthe position to make those decisions have wanted research focused onprostate cancer, so they allocate money for prostate cancer. The NIHdoesn't allocate money for specific disorders. Those kind of moniesare allocated in response to congressional mandates.

Now, Tony Fauci doesn't have the ability to start a brand-new programon chronic fatigue syndrome. This is what I want to do. He'scontinually being pushed to work on influenza, HIV, bio-threat agents,things of that nature. And there is a portfolio for chronic fatiguesyndrome, which, as you said, is quite small. There are not manypeople working in this field.

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. Iprotested, and for reasons that are obscure to me this same individualwound up back on the study section, and I got a similar unfundablescore. Am I upset about this? Absolutely. Do I think Tony Fauciknows about this? No. And if Tony Fauci were to find out that peoplesaid that he claimed this is a psychosomatic illness, he would deny itbecause he doesn't believe that's true. I'm sure he doesn't believethat's true....

[In the first set of critiques I was also told] that everybody knowsthat this is a herpes virus infection of peripheral blood mononuclearcells so there's no reason to look at the gut. This is the nature ofstudy sections. You can't control what people are going to do whenthey get on…. They do the best that they can, but that doesn't meanthey're up to the task and it doesn't mean that they're appropriate.

One of the challenges is that there aren't enough people doingcredible research in the field. Period. If there were more people,you'd have better study sections, better work and we'd be furtheralong in terms of sorting out this problem.

Kitei: But it's a vicious cycle. If you can't get funding—

Lipkin: It's not the leadership of NIH. That's not the problem. Theproblem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That's the way it gets done. That's the way HIV got done,that's the way breast cancer got done, and so on. It has to besomebody who has some ability to influence the purse. And if thathappens, the NIH would only be too happy to take the money and toallocate it and get the best science done. That's all the NIH caresabout.

Kitei: That's a crazy way of doing things. If anybody shouldunderstand this disease, it's scientists.

Lipkin: But they don't listen to scientists. Congress doesn't listento scientists. They listen to people who vote for them. I was veryinvolved in getting the autism bill passed, in the late 1990s andearly 2000s. And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence. And it was the parents who did it. The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don't have the energy or the resources that are needed to go and lobby.

Whereas if you have a child and you're otherwise healthy, and you'relooking at this child every day, then you're motivated, you're strong,you're powerful and you go down there and you complain, and push andsqueak until you get the resources that you need. The other peoplewho have the same problem are people with mental illness, and I am notsaying by any means that chronic fatigue syndrome is mental illness.I'm just saying that these are also vulnerable people. Vulnerablepeople who do not have others looking out for them are most at riskfor not getting the science that's needed to address their problem.

But the solution for that is for the healthy ones, the people who haverecovered, or relatives and friends of those who have these disordersneed to push. I talk to everybody. I do everything I can to promotethis. When people who are scientists tell me they don't believe thisis a real disease, I refute it, I refute it with facts, I talk to themedia, but I don't have any traction with Congress because I live in ablue state. And New York is in favor of scientific research andincreasing the NIH budget. And the problem is, when you go into theSouth and the Midwest, you don't have that support. The budget for theNIH has been cut dramatically.

I'm on the advisory committee for Francis Collins, and I can tell youthat Francis Collins, the director of the NIH, believes that chronicfatigue syndrome is a problem. He would love to have the resources toallocate. The resources are going to have to come because people pushtheir representatives to provide that kind of support. That's the onlyway it's going to happen. I'm sorry about that, because believe me,the last thing I want to do is begging for dimes and quarters for mywork....

Kitei: You mentioned someone on the study section said this was apsychosomatic illness. Can't this person be educated?

Lipkin: I think this person has to be eliminated. I pushed to have himeliminated permanently from this study section. I'm not going to tellyou his name because it's not appropriate, and I'm not supposed toknow it….

Kitei: That's one person, and it would be great to get him eliminated,but there's a basic feeling in the government—certainly in the CDC—that this is a psychosomatic illness....

Lipkin: I've read Absence of Evidence with the autism stuff and soforth. I'm sure people mean well. Hillary [Johnson] is a very niceindividual. I like her. But I've also had people tell me that they'venever said the things she claims they've said. This is a problem. Iknow some of these people. I knew Bill Reeves. He was a problem. Buthe's no longer on the face of the earth. So that's not an issue. AndBeth Unger does not believe that this is a psychosomatic illness. Shejust doesn't. And Bill Switzer doesn't believe that this is apsychosomatic illness. So I don't know where people get this. And [CDCDirector] Tom Frieden doesn't believe this is a psychosomatic illness.As I've said, the best way to get results is to organize a grass-rootscampaign to push the Congress to allocate money for chronic fatiguesyndrome research and treatment. That's really the way to go.

Kitei: But then they do psychosomatic research, personalitydisorders.... Beth Unger's [name] has been on the studies that dothis. Or they do an exercise study, and instead of doing a two-daytest—because it takes two days to see the problems in the recoveryperiod—they only do a one-day test because they say it's too hard onthe patients. But patients are willing to do this.

Lipkin: I've had physicians say they can't get a rectal swab becauseit's too painful for patients.

Kitei: There are plenty of patients who would be willing to do it.

Lipkin: There are all kinds of things people will say, and I don'twant to fight with you.

Kitei: No, no. I don't want to fight with you either.

Lipkin: I'm fighting for you. What I do want you to appreciate though,is that our enemy is not that the people we're talking about. It justisn't. These people, we may disagree with them, we may think thattheir strategies are insufficient, we may want to do thingsdifferently but none of the people whom you mentioned think it's apsychosomatic illness or think it's overstated. That's just not whothey are. I know these people. I've worked with them for years…. BethUnger was desperate for me to be involved in these conference calls,and she was very happy to hear about cytokine abnormalities, and shewould like to do more work on genetic responses and so on, all of thisshe's interested in doing. She's interested in a biological solution.

Kitei: We'll agree to disagree on that. How can people donate to our research?

Lipkin: We are eager to move as rapidly as possible. We will be asfrugal as we can be. We deserve the same kind of work that I do for the Saudi government, trying to figure out the origin of MERS or anything else. I want to be working for [patients]. And the problem we have at present is that I've gone as far as I can go before the institution says, look you can't pay your bills. That's where we areat present. I need to be able to pay for the work….

There are some people who have herpes virus infections. We can definethose, we can detect those. Those people should be diagnosed becausethey can be treated now. The same thing is true with Borreliainfections. We've created a series of multiplex assays to detect thoseinfections…. And those people can be treated, and maybe that takescare of 10 percent of people. We need to deal with the other 90percent. And that's why we need to look for other sources ofinfection, other ways in which things get triggered. And it's going tobe a wide range of things. Some people it's going to be infectious,some people it's going to be toxic, some people it's going to be hitand run. All of these things need to be understood, dissected,addressed, and we will chip away slowly at the problem. This is likecancer…. Some people need radiation. Some people need this drug, orthat drug or the other drug.... It has to be personalized medicine.

Kitei: But how do you know that yet? There might be acommon-denomination pathogen, like what hit Incline Village andLyndonville, New York, when all those people came down with it.

Lipkin: I wish I could get samples from either of those outbreaks. Ican't. They don't exist. We've been asking for them for years.

Kitei: [Dr. Daniel] Peterson doesn't have them?

Lipkin: He's sending us some materials. Maybe we will find something.There's some mantle cell lymphoma. He's got very few samples, becausemost of it went to WPI [Whittemore-Peterson Institute], and theyrefuse to return it to him. Believe me, we are doing everything we can. It's an incredibly depressing, humbling experience. It's so much more difficult than 99 percent of what I do day-to-day.

There are set questions people are encouraged to answere.g."Tell us 5 things about you that the people in your life probablydon't know (non-illness-related)"and..."Tell us 5 things about you that the people in your life probablydon't know about your life with CFS / ME"

People can either post it on their own blog (and she'll link to it) orelse e-mail her the answers and she'll put them up on her blog.

People can, if they want, then link to the info in their own Facebook,on Twitter, etc so people in their lives can read about it.

Join us on Monday, May 12 at 3PM Eastern Time for a special episode onME Awareness Day.

We will be joined by three unique individuals with distinctbackgrounds and expertise related to myalgic encephalomyelitis (ME).Our guests include:

Ryan Prior: Ryan is a journalist, film producer, and socialentrepreneur from Atlanta, GA. A former writer for The Daily Beastand USA Today, he is now executive producer and writer of the featurefilm Forgotten Plague (http://mecfsdocumentary.com/; previous workingtitle: The Blue Ribbon). The documentary focuses on the role thatmajor new trends in Big Data and genomic medicine play in addressingME/CFS and transforming the future of medicine. In conjunction withthe film, he is co-founder of the Blue Ribbon Foundation which willpromote the documentary and install first-year medical students at topneuro-immune institutes.

Leonard Jason: Leonard is a professor of psychology at DePaulUniversity in Chicago, Illinois, where he also directs the Center forCommunity Research. His chief professional interests include the studyof chronic fatigue syndrome, smoking, smoking cessation, and OxfordHouse recovery homes for substance abuse. His interest in chronicfatigue syndrome began when he was diagnosed with the condition in1990 after having mononucleosis. Check out his book "Principles ofSocial Change":http://www.amazon.com/Principles-Social-Change-Leonard-Jason/dp/0199841853/ref=sr_1_1?s=books&ie=UTF8&qid=1399569615&sr=1-1

Jeannette Burmeister: Jeannette is an attorney, ME activist, writer,mother, and wife. You can follow her health journey on Thoughts AboutME: http://thoughtsaboutme.com/

"I like Dr. Oz, I really do, but I'm less than impressed with some of his recommendations. Fortunately they are safe, but do these natural weight loss remedies really work?"

* * *

I like Dr. Oz, too, because he does address CFS and fibro as if they're real diseases, but he never seems to have on the experts who talk about the more serious aspects. He invites Dr. T, with his wrong-headed advice to exercise your way back to health. Unless you're already back to 80-85%, exercise will backfire and land you back in bed.

When a doctor insisted that my previous experience with exercise didn't count because I hadn't taken contemporaneous notes, I was mis-remembering the results, I took a week when I felt well enough to walk to a store 6 blocks away every day to pick up something for lunch (since I knew that after exercising I wouldn't have energy to cook). The first day, I collapsed into bed upon return and had to rest a couple hours. The second day, I collapsed into bed upon return and had to rest longer. By the end of the week, I tried to get out of bed and crumpled to the floor, unable to walk even the few feet to the bathroom. And this time I documented absolutely everything about it, every increased symptom, to prove that exercise makes me feel worse, not better.

It took weeks to get back to baseline, and I made sure to document that, too.